It’s not all about swearing

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Dr Mandy Barnett explains the wider implications of Tourette’s Syndrome.

Tourette’s syndrome (TS) is a much misunderstood and misrepresented condition. It is more common than previously believed, affecting at least one in a hundred people. It has genetic and environmental causes, so tends to run in families, but is often not diagnosed or misdiagnosed. It is classified as a neurodevelopmental disorder.

Tourette’s syndrome is a tic disorder, but not all children with tics have Tourette’s. Tics can be any sudden twitch, movement or sound that a person does repeatedly and involuntarily. They can be simple e.g blinking or sniffing, or complex, e.g. throwing an object and usually occur in bouts, with gaps in between. They tend to become more complex and frequent as the child gets older.

For a child to be diagnosed with Tourette’s they must fulfil three simple criteria: at least one vocal tic and motor tics (movement-based or involving muscles) which are present for at least a year but must also change.

Associated Conditions
While all Touretters have tics, some have associated conditions that may affect them as much or more than their tics. Obsessive-compulsive disorder (OCD) and attention deficit hyperactivity disorder (ADHD) are both genetically linked to Tourette’s. Autism spectrum disorder (ASD) also appears more commonly. RAGE (repeated anger generated episodes) attacks can also occur, sometimes in young children before tics emerge, where the child becomes suddenly furiously angry with no apparent reason or provocation. They often occur when the child is stressed or tired  and can be upsetting for the child, as they don’t know why they became angry in the first place. Children with Tourette’s may also have more subtle difficulties such as sensory defensiveness (heightened awareness of sound and tactile stimuli) and learning disabilities such as dysgraphia.

Signs of Tourette’s usually first appear between the ages of 5 and 10, although they are often not diagnosed until much later and are frequently misinterpreted both by carers, teachers and many health professionals. In my survey of young people struggling with Tourette’s, a number reported that people around them thought they were faking their tics or were just attention-seeking, both at home and at school. This left them feeling depressed and isolated. 

Social Aspects
In the early primary school years, when their TS is beginning to emerge, misunderstandings commonly arise, such as:

Interpreting motor tics as ‘fidgeting’ or signs of ADHD (even when that is not present)

Interpreting vocal tics as being ”noisy’ or ‘disruptive’

Older children may make more effort to suppress their tics, however, this has a knock-on effect, as suppressing tics is also exhausting and affects the child’s ability to concentrate. Tics can also be ‘set off’ by other people imitating them, consciously or unconsciously. This can be a deliberate form of bullying, or it can be friends or classmates who provoke tics that they find ‘cute’.

When they attempt to suppress their tics for a prolonged period of time this can result in tic attacks that  are disturbing and potentially painful to experience and can be distressing and frightening to observers, who may mistake them for an epileptic fit. 

Teachers need to understand how Tourette’s can present, and give students with TS permission to leave the class (with a quiet space to go to) when their tics become overwhelming, as well as recognising that the student may struggle with concentration and require additional time to complete tasks or assignments.

School can be an isolating experience for someone with Tourette’s, especially as the frequency and severity of tics often peak during adolescence, when peer support is most keenly sought. For some, this is compounded by a lack of support at home.However, in addition to the social aspects of school, students with TS can be hugely disadvantaged academically if their learning needs are not recognised and supported.

When a child with Tourette’s tics, they may make repeated or partially disguised noises such as  throat-clearing, coughing, or saying  random words or phrases. A small percentage may have coprolalia (swearing), which is what most people associate with Tourette’s, but this is uncommon and rarely permanent. Motor tics may involve a simple movement such as facial grimaces, or throwing a pen on the floor.

If they have OCD, this may affect them in obvious or subtle ways. Children with Tourette’s are less likely to have common compulsions such as handwashing, and more likely to need symmetry and order in the objects around them. They may also struggle with tasks such as timed question papers because they can’t move from one question to another if they get stuck on a particular topic, and they end up running out of time. 

If they have ADHD, while younger children may demonstrate inattentiveness and physical fidgeting, a teen with Tourette’s and ADHD may have no recollection of a lesson, will struggle to complete any associated tasks, and forget deadlines or be unable to focus on getting an assignment done.

If they also have dysgraphia, they may struggle to hold a pen because their hand cramps up, and if they have OCD, they may also have the compulsion to write over the same words multiple times (overwriting) which slows them down and makes their writing illegible. Writing and listening at the same time can make taking notes in class very challenging.

The combination of tics, OCD and dysgraphia can lead to significant under-performance in formal assessment settings. When our son sat his first GCSE, fortunately a year early, he was predicted an A grade based on his coursework, but in a timed examination, he was awarded a D. Once his school assessed him and applied for access arrangements, he was able to achieve  grades in line with his coursework.

Mandy M Barnett
Author: Mandy M Barnett

Mandy M Barnett
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Dr Mandy M Barnett is a psychology graduate, clinical educator and consultant physician. She has worked for over thirty years in the NHS and as an Associate Clinical Professor at Warwick Medical School. She is the author of It’s Not All About Swearing! A Practical Guide to Tourette's Syndrome for Parents in a Post-Pandemic World.

Instagram: @mandy.barnett9400
LinkedIn: @mandy-barnett-898438ba

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